Interview conducted at Dr. Bransfield Office Sept 05. In the first part of the interview are a listing of all the complications from which Lyme patients suffer. He then speaks some of disease theory and provides a few expert references in the field. He also discusses testing labs and makes specific recommendations.

I began by telling him that I had been on Mepron and then asked permission to tape the interview and he agreed.
B. (Bransfield)  R. (me—Richard)

His next question was:

B So you had the 120 days of Mepron?

R. Yes

B What makes you think Morgellons?

R. Simply for the symptoms--the itchiness, I never got the 10 power microscope to see

B Any filaments?
R. Never observed any filaments. Whatever it was, it delivered to me the babesia and the borrellia. R I still have some of the sites that have been with me for 13 years.

B. So the original infection was 92? Had you been diagnosed with Lyme?

R. No, no one ever suggested testing for it.

B. Treatment began when?

R Early May of this year.

B History of tick bites?

B  Bull’s eye rashes?
R. No, but I had plenty of rashes

B. Not a Bull’s eye?

R. They were associated with the bites I had all over my body.

B So you did have mites

R. Several types. I would imagine several species of mites.

B. Flu like illness when it began?

R. NO, just an incredible itching and biting.

B. Recurrent bulls eye rash?

R. Lab findings?

R Yes,

B. Just the Bowen lab tests, right

R. I had several plug samples and basic blood tests done and nothing. One dermatologist examined some skin samples I gave him and he couldn’t find anything. He thought I had delusions of parasitosis. Dr. Harvey also asked me if I had any of those strawberry blood spots.

B. Can you show me? At which point I showed him a few.

B. Prior psychiatric illness before 92?

B. Prior medical problems before 92?

B I am going to ask a million questions and am using 1992 as the baseline. AS I go through the symptoms I’ll assume you had none of these symptoms before 92 unless you tell me and I want to know if these are present or if since have improved.

B Do you have trouble with attention span

B. Easily distracted with frustration

B. Very sensitive to sound? Yes, but have always been so.

B. Sensitive to Light

B. Touch or smell

B. Forget what you went to next room to get

B. Spatial memory i.e. where your car is parked.   No more than the next person.

B. Short term memory;

B. Long term memory

B. Recalling names

B. Trouble entering things in the memory correctly

B. Word finding problems

B. Trouble recalling numbers

B. Phone numbers, names?
R. Faces?  I don’t know if it’s more now so, but I can meet someone one month and not recognize them the next month.

B. OK with tying shoes, riding a bike

B. Geographic locations, getting lost

B. Letter reversal when you write

B. spelling errors

B. Word substitution errors

B. Number reversal

B. Reading Comprehension difficulties

B. Auditory comprehension--understanding what someone says

B. Problem localizing a sound?

B. Spatial or depth perception problems, depth perception

B. do you bump into door ways?

B. Left/Right Confusion

B. Problems with arithmetic/math

B. Speech, words flow OK

B. Stuttering

B. If  you’re writing a letter or essay, can you put your thought into writing OK
B. Hand writing OK? 
R. Trouble with my hand shaking as I write lately, started after my divorce about 10  months ago.

B. Depersonalization--you feel like you’re there, but not there? I’ve always experienced it to some degree, but it hasn’t changed and is very infrequent

B. De-realization where things around you don’t seem real?

B. Can you picture a map in your head OK

B. Do you get intrusive images that come into your mind that are aggressive, sexual or otherwise?

B. Do you dream even when you’re awake?

B. Have any nightmares?

B. Illusions where there’s something you hear or see in the corner of your eye?

B. Hallucinations where you hear music that isn’t there or see things that aren’t there?

B. Smell things that aren’t there

B. Unfocused concentration--hard to concentrate on task

B. Brain fog?
R. Two days I had trouble--one where I couldn’t get up. Don’t know if it’s hypo tension!

R. Sleep paralysis--I’ll get back to that. Brain fog is like you’re taking Benadryl and you’re out of it.

R. That may have happened to me a week or so ago but I thought it was from having a high sugar (lots of fruit) for breakfast.

B That can do it. Trouble prioritizing? Multiple tasks?

B. Trouble doing more than one thing at a time?

B. Racing thoughts

B. Obsessive Repetitive thoughts

B. Apathy where it’s hard to take an initiative to do things? Yes, since my divorce about a year ago--that’s been a stressor

B. Trouble with abstract reasoning

B. So far it doesn’t look like Lyme, a lot of people with the Morgellons really kinda have a pattern with this, but the itching drives them crazy

B. Low frustration tolerance? Varies

B. Sudden abrupt mood swings

B. Hyper vigilance  --  Constantly being on guard?

B. Paranoid extreme suspicion of people

B. Disinhibition or poor impulse control?    

B. Excessively startled

B. Explosive anger

B. Suicidal

B. Homicidal

B. Accident Prone

B. Decrease social function

B. Decreased Job performance

B. Marital or family problems? Got divorced

B. Substance abuse alcohol drugs

B. Legal problems--arrested for anything

B. Dissociative episodes

B. Tendency to double check triple to make up for memory problems

B. Tendency to drop things from your hands?

B. Crying Spells?

B. Depression?  Yes, I’ve been more depressed since the divorce.

B. Bipolar illness?

B. Panic attacks ?

B. Obsessive Compulsive disorder

B. social phobia

B. Generalized Anxiety

B. Post traumatic stress disorder --shell shock

B. Not well rested in the morning?

B. Trouble falling asleep?

B. Waking up in the middle of the night?

B. Early morning wakening?

B. Excess drowsiness during the day?

B. Erratic sleep cycles where you’re awake, sleep at odd hours during the day?

B. Loss of appetite?

B. Weight loss?

B. Overeating

B. Excessive weight gain?

B. Decreased libido --loss of sex drive

B. Decreased libido capacity for arousal or orgasms

B. Decreased ability to enjoy yourself

B. Difficult to relate to pleasure

B. Body temperature fluctuations

B. Skin flushing

B. Intolerance to heat
B. Intolerance to cold

B. Low body temperatures

B. Low grade fever

B. Night sweets

B. Chills?

B. Headaches much?

B. Loss of smell or taste

B. Blurred vision?

B. Sensitivity to bright lights

B. Sensitivity to flickering or florescent lights

B. Floaters ------ like flash bulbs

B. Blurred visions

B. Conjunctivitis

B. Eye Pain

B. Night blindness

B. Shadows in field of vision

B. Neuritis

B. Aritis

B. Double vision

B. Lid drop where one lid drops

B. Loss of sensation on the side of face

B. Bells Palsy

B. Ringing of the Ear

B. Hearing loss

B. Dizziness

B. Vertigo room spins
B. Motion sickness

B. Loud noises make you nauseous of dizzy

B. Episodic loss of speech, choking on food or trouble swallowing

B. Weakness in neck muscle in front or back

B. Look straight toward me and put your tongue out.

B. Seizures

B. Numbness, tingling

B. Loss of sensation in any part of your body

B. Burning like skin is on fire

B. Static electricity sensation on your body

B. Skin crawling sensations like something crawling under the skin

B. Stabbing sensations like being stabbed with something

B. Muscle weakness

B. Tremor?

B. Twitching?

B. Muscle tightness where muscles go in a knot?

B. Wrestless leg where your leg has to keep moving?

B. Myocronic jerks?

B. Torticollis?

B. Turrets?

B. Parkinson?

B. Fainting spells?

B. Herniated discs?

Then he asked me to stand with my feet together like I’m standing at attention with my arms out in front of me and asked me to close my eyes to check for swaying

B. Joint pain

B. Joint swelling

B. Tightness creaky joints

B. Fractures of bones

B. Shin splints--pain in shin

B. Ribs, breast bone, collar bone, hip

B. Elbows tender?

B. Bottom of feet sore

B. Chronic fatigue syndrome

B. Fibramylagia?

B. Muscles tender?

B. Cartilage and nerves tender

B. Ear? Tinnitus?

B. Carpal Tunnel Syndrome

B. Chest pain

B. Mitral valve prolapse?

B. Racing pulse?

B. Episodes where you heart goes real slow and then real fast?

B. Pericarditis?

B. Cardiopathy?

B. Murmur?

B. High Blood Pressure

B. Shortness of breadth

B. Cough

B. Sore Throat?

B. Swollen glands

B. Asthma

B. Upper GI Distress

B. Heart Burn?

B. Irritable Bowel

B. Abdominal Bloating

B. No other GI symptoms

B. Testicular Pain

B. Irritable Bladder--have to urinate all of a sudden

B. Urinary incontinence--loss of control of urine.

B. Recurring urinary track infections

B. Intolerance to alcohol

B. Hair loss

B. Thyroid problems

B. Wilson syndrome?

R. What’s that?

B. If you don’t know, it’s ok.

B. Adrenal insufficiency?

B. Blood Sugar?

B. Vasculitis?

B. Ankle swelling?

B. Tooth pain?

B. Periodontal disease?

B. Nose Bleeds

B. Sensitivity to a lot of chemicals

B. Lots of Allergies

B. Enlarged spleen

B. Tendency to bruise easily

B. Chronic pain

B. Redness of palms or soles of your feet

B. Did you ever get a worsening even after you went on antibiotics?     

R. No except for the time I couldn’t wake up and the dizziness.

B. You probably had an ear thing!

Have antibiotics ever helped you at all?

R. Yes, I’m on the zithromax and before I was on the antibiotics I had to watch my diet very carefully, since I’m on the Mepron and the antibiotics within six weeks, I can eat normally and have a few papules form, but nothing like it used to be and the sites I’ve had for over ten years are beginning to diminish in size.

B. What diet works?

R. It’s a low sugar and high fat diet with sensitivities to soy and additives like glycene, carrageen, fruit... It’s quite and involved diet that I discovered works for me. Without that diet I think I’d have lots of symptoms on your list. In my researching I’ve come across things like Dercum’s syndrome and Blastomycosis --it’s a fungal infection. Are these all kind of related?

B. Yeah, what happens, people call it the common disease theory. There may be multiple entry points, whether it’s Mercury poisoning or Lyme or viral, that once these insults occur, many of these conditions look very much the same. They may have different entry points, but similar disease processes at a later stage. OK? Which makes it hard to tell them apart symptomatically although sometimes that may be a way, for instance the bull’s eye rash which is more unique to Lyme versus let’s say chronic fatigue. So, it’s that early manifestation that may be a give away when you end up with a chronic fatigue symptom, which one is it?

He went on with the list of symptoms

B. Decreased white count

B. Liver enzymes

B. Psyche treatments--you had Orap? Did that work?

R. Absolutely

B. What did it help?

R. It helped get rid of the itchy mites whatever they were, Morgellons or whatever, then I was only left with the papules that form on my skin.

B. OK, and now you’re on zyprexa?

R. No, I’ve been off zyprexa for about 6 months. I was on it back in Feb-March when I got recontaminated. Whatever this thing is, the eggs can reside in clothing or upholstry for years and although it may not affect you, it will bring it out full blown in me within hours.

B. Right. So you’re on zithromax now right?

R. I’m on fungazole once per week and Flagryl two times per week.

So you’re on fungazole once/week, Flagryl two times per week and 600 mg zithromax once a day. Anything else?

R. I was on Mepron for a while. What’s the SMZ/TMP?

B. That’s Bactrim

R. I was on that for about three months and then he switched me to zithromax

B.  Did the Bactrim help?

R. It helped, but then I ran out of the Bactrim at the time he had surgery and I was off it for two weeks and the papules and itchy symptoms were returning. He started me on the zithromax at that point and things cleared up within days.

B. Anything else as far as back ground? Do you have the papules now? Could I see them?

R. “Sure, they’re on my neck,” as I pointed to the spot.

This is a new one,

B. I see them on the top of your head

R. It’s been there for 13 years and is the best it’s ever been. Now as I understand in talking with Dr. Harvey that the immune system, once you get rid of the Borrellia and the babesia from your system, your normal immune system is supposed to take care of this.

B. Yeah, here’s the theory. Now you don’t have the symptoms that most Lyme patients have. Most Lyme patients would say yes to two thirds of those questions.

R. It might be because of my diet?

B. Yes, It might be because you had a Borrellia infection that just sat there a symptomatic until you added this other piece to it. The theory is that both Lyme and babesia suppress your immune system so that if they are less active, then your immune system is more robust.

R. This might sound strange, but my nose has always had a lot of puss--not pimples. All I had to do was squeeze the skin and lots of puss would pop out. Since I’ve been on the antibiotics, I’ve have little if any puss at all. Was that the dead white cells in that puss?

B. Actually that’s Dr. Richard Shumaker’s theory in Pocomoke MD. Chronic staff infections, strep can, lay the ground work for all these problems. It’s hard to say whether it’s toxicity, deficiency, or chronic low grade infections and sometimes one can contribute to the other. But those are the different competiting theory with these chronic low grade diseases. But when I look at people who have the Morgellons and  history similar to what you described where they don’t have a lot of the symptoms, the itching is a big thing and it’s hard to say that it’s delusional parasitosis. But basically that’s what people call it when they can not find an explanation for it. And you don’t seem to be delusional about anything else. Why would it just be that one thing?

R. Yeah, why would the person I lived with contract it? Why would my mother contract it? They say delusions are Folie à deux. or Folie a trois?

B. The higher the numbers go the less probable it is. Well that happened with the Gulf War Syndrome. My guess is that it is some kind of infectious thing that we don’t understand yet. Now with the people who have the Morgellons, the main treatment is biaxin which is related to the zithromax and the other is Bactrim. Somehow they seem to help. From a symptomatic stand point, sometimes I give Periactin which is an antihistamine to help the itching.

R. Itching for me isn’t an issue unless I stop the meds and screw up my diet

B. You’ve been on zithromax how long?

R. Six weeks and I have another refill.

B. The question is what to do then? How long do you treat it.  Morgellons--recently the FDA or someone came out with that it’s an imaginary illness. Now if you look at it, so many of these cases, they are so much a like it’s hard to picture that there isn’t something there.

R. They all suffer from the same thing.

B. I think there’s something to it. Generally a lot of the people who have it test positive for Lyme, although they don’t have the classic presentation, and treating it as Lyme might help it

R. What does this show you (looking at the Bowen labs)

B. See this inclusion, it does look like babesia or some sort of mechanism--similar to malaria--there shouldn’t be something inside your red cell. You can see those occlusions there. It’s hard to know. The person who originally developed this is Lida Mattman in Michigan who has been a microbiologist for 50 some years. Dr. Mattman was once nominated for the Nobel Prize. This is a spin off of that work.

Although what started this is a lot of people test positive for this. So it’s hard to standardize this and know what it means. Infected and infectious are two different things. Many people may be infected with something and not show any symptoms.

R. Carriers?

B. Yes, we have ten times as many bacteria in our bodies than we have cells and that’s ok in a state of health. So and we may do better with them there and we depend on some of them. So having microbes in our body is not necessarily a bad thing. It’s a matter of which ones and what they do and how well our body tolerates what’s there.

 And some of these disease theories may be an unusual body reaction to a common microbe that someone else might not be bothered by.  

So this photo does show something that should not be there, but is there a cause/effect relationship. Whatever this is, I don’t know if we really can explain exactly what it is. But even if you can’t explain it, if you know the treatment, I’d settle for that. I’d rather have a treatment than an explanation. And this treatment seems to work. Now one person who does a lot of it--Ginger Saverly--in Texas near Dr. Harvey. She and doctor Stricker have been paying attention to this and how to treat it. I’ve had a few Morgellons cases and have seen that that protocol does seem to work.

R. Normally with Morgellons, the normal immune system does take care of it? The question is that after the antibiotics, then what? If I still have these papules, then what?

B. My understanding is that it isn’t a constant treatment although I’ve only had a few cases. NJ isn’t as much of a hot spot as some other places like Florida, Texas, and California. But to some degrees, maybe there’s just awareness there. If they are aware of it, they pick up the diagnosis, if they aren’t aware they overlook it. I’m just annoyed how so many call this delusional--like some of those meds like Orap or zyprexa can work--some have antiviral activity and they may work that way rather than their anti delusional effects.  

R. Have you heard of ORAP working for this?

B. Yeah, Orap

R.I know it’s used for turrets syndrome

B. That’s what it was originally used for and it’s in that whole category and they never went for other indications. It’s kinda like thorsine and haldor. They don’t use Orap so much these days. I had one person who was on it about a year ago. Zyprexa we use that a lot in general psychiatry but for the Morgellons, I use Periactin. It’s an antihistamine like Benadryl, but mainly for the itching. But I’m more inclined to use Biaxin and Bactrim

R. Would you suggest I switch to one of them?

B. Have you hit a plateau?

R. No, I’m improving and I’m not just depending on the medication. I’m also using a product called skin zinc--you might have heard it advertised--and it seems to help.  I’m also using ionic minerals.

B.  There’s a lot of things we don’t understand. In psychiatry I see a lot of people that are diagnostic problems. And when something’s poorly understood--like years ago tuberculosis was considered psychosomatic.

R.Right, because they didn’t understand it.

B. Once it’s understood and people make sense out of it, then we lose it in psychiatry and internists take it from there. But when something is on the fringe and not well defined those cases are sent to us often with the question, “Is it psychosomatic, is it delusional, or is this an illness that’s just not understood. Now there may be a psych component with a lot of these things or the emotional distress of having a chronic illness so that may compound it. But in your situation, it doesn’t sound that way to me.

R.I operated a biofeedback center locally for year. My practice was basically people who went to a doctor and didn’t get better-stress

B. Well stress will make anything worse.

R. Yes, it will exacerbate any problem.

B. If this is working and you’re tolerating it? 600mg of zithromax is a healthy dose and some would frown at that much for that long. Have you have any trouble with health insurance?

R. No, not at all.

B.  Have you had any other testing for Lyme?

R.No

B. There’s no sense to do it now because the antibiotics would throw it off and after being on a course of meds this long, I doubt that it would show anything.

R. According to some of Dr. Harvey’s information, is says that in the presence of antibiotics, borella often goes into a cyst form.

B. Yes,

R.Does that mean they won’t be affected by the antibiotic, then?

B. Yes, depending on which antibiotic. Like your normal antibiotic only kills when the organism is in a dividing state. So in that cystic form, it’s not going to be so effective.

R. So zithromax  would be effective against the cyst form?

B. No, that’s I think sound of the logic for the Flagryl. One theory, and this is Lida Mattman, is that borellia live inside yeast cells so if you take too much in the way of antibiotics, you can get a yeast over growth.

R. Candida?

B. Right, and the borrelia living in the yeast cell may be more an issue, so you may be working against yourself sometimes with a lot of antibiotics. You can unwittingly create an environment that’s conducive to the growth of almusise. ?? 

R. Would that be the main difference as to how you and Dr. Harvey treat Lyme as opposed to the general medical community?

B.  He and I both recognize that chronic Lyme makes sense. Not everybody does. It’s hard for other people to think that infections can just sit there in the body. It’s more a perception like you get it, we give you an antibiotic and now it’s totally gone. And so many days should totally eliminate it--period. And if you have other symptoms, it’s a totally different problem.  Although when we look at people in that are in that category--Chronic Lyme--they are all the same with similar symptoms and it just doesn’t make sense. And they take the antibiotics and get better to varying degrees.

R. Once the antibiotics stop and are no longer present, does it migrate back from the cyst form to the bacteria form?

B. It could, but if you have a good immune system for keeping it in check that might not happen although we don’t know what we’re talking about--a virus can do that too. Think of a fever blister, it comes out when you’re stressed and when you’re feeling better it just disappears.

It doesn’t mean that it’s gone?

No, like I have one here on my lip and if I go skiing, the altitude, the jet lag, being exposed to the outdoors, brings it out. But being at the beach in the summer doesn’t bring it out, it’s there and can go in an inactive state.

R. It’s the effect of the different stressors.

B. Maybe that’s how these things work, but because a lot of people don’t believe it’s real. There’s a tendency to ignore it and it’s hard to get money to do research on it.

R. Cause they think they already know as much as they should know about it?

B. Well, people that do research like to do things that are objective and factual. Doctors have to deal with here and now ways that people present things in their office. It’s an issue for doctors who treat it, but it may be something hard for researchers to know what to do with.  So there isn’t a lot of research to explain the whys and wherefores and how this works. If it was, then it might be seen as more real and other people might jump aboard. Think of where AIDS was in 1977 where it was seen as a curiosity that a couple people were complaining about and it was hard to make sense of it.

R. Well that was even true for Lyme disease--they thought people were just crazy.

B. Well, it’s true of anything before people can make sense out of it.

R. Dr Harvey had me getting blood tests every two week.

B. Usually I’d be working with someone who handles the medical part and I’d be doing the psych part. It sounds like it’s more of a general medical issue. Your problem is that there’s no one around that understands Morgellons. I think Dr. Eiris has treated a couple cases. He’s in Jackson. And a nurse practitioner in Texas, if fact she came out with an article about it recently.

R. I’m a bit confused and have a problem. I know you’re a psychiatrist, but when I spoke to your gal on the phone about Morgellons and Lyme, she indicated that you would handle the general medical aspect in the absence of any psychiatric issues. I’ve probably sent your name and number to over a hundred and fifty people who are in search of  physicians specializing in Morgellons.

B.  I’ve kind of done it because there are few people who deal with it.

R. Dr Harvey sent a letter with a list of physicians--your name being one of them that he’d recommend.

B. So you’ve been getting the CBC every two weeks? So we can monitor it. You’re Ok with the refills at this time so the big question is what to do when you are getting near the end of the treatment

R. Do I get another test from Bowen or do I assume it’s gone?

B. Well, the Bowen is more looking at babesia. We don’t know why--it’s kind of like the idea of AIDS when AIDS first came out and they found these other infections. Eventually they found what the issue was and even now there’s still a debate. How it manifests and what the cause is can be two different things, but if this works and it seems to, then it’s worth doing. And your case isn’t as bad as other’s I’ve seen -- people are just jumping out of their skin.

R. I’m lucky; garlic, zyperxa, and the diet have kept me sane.

B. Whatever it is, do it. If there’s a toxic component, Richard Schomaker is the person who knows a lot about this and he’s in Pocomoke MD. On the Eastern shore.  He’s a biochemist who went to med school and has a lot of ideas about how these things fit together. Do you have any other records that might be relevant?

R. No.

B. You have six weeks left, then if I see  you after you get your blood work. You’re only on zithromax. Part of logic is that zithromax can treat Morgellons--whatever Morgellons is. But the other part is that since you have babesia, it’s better to use that rather than biaxin. I’d probably start backing you off of it, staying on it too long can create other problems--yeast and so on. But let’s stay on it for now. I’ll go with his protocol. Stick with what you’re doing. So the lesions are less that what they were?

R. Yes, substantially

B. That’s the bottom line.

R. Generally Bowen tests for Lyme?

B. Yeah, although a lot of the tests were coming back positive. So people were thinking there were too many positives.

So maybe everybody’s infected, but not everybody has the disease--that was Lydus theory which might make sense, but when it’s too high although they just had some FDA approval which is good. But the lab core and quest are poor blood testing for it. But since you’ve been on the antibiotics it probably won’t show. You don’t have the clinical symptoms that go with Lyme although you might have the infection. 95% of the people who have Morgellons test positive for Lyme. But you may not test that way now.

R. If someone were to come to you and you would suspect Lyme, what lab would you send them to?

B. Igenex in Palato Ca. Second would be MDL or Stoneybrook. Igenex is the best lab there is for that and Quest would be the worse. But that where most people send because they have the managed care contracts. So a lot of time people have no indications (bands) from Quest and many indications (bands) from Igenex. But that’s where I go from the clinical symptoms because I get tired of waiting for all that with the lab work.

 End of Interview.